22 September 2018

Pathological Demand Avoidance- Non-Negotiable Behaviour - PART 3




Choosing Your Non - Negotiables



So by now, you’ve hopefully read the previous two posts:



Hopefully by this point you have learnt a few things that are important to the overall goal of reducing anxiety and that your language needs to change when speaking to an highly anxious child in order for them to be able to follow hidden instructions or comply with demands that are necessary to living a fulfilled, happy and safe life. You’ve learnt that by changing your language you child will feel less dictated to which will hopefully allow their anxiety levels to decrease to a much more manageable scale whereby they’re able to feel a little more in control of their own lives and be more approachable, more resilient, and most importantly less stressed and a LOT more happy. 

Secondly, I talked aboutDoes It Really Matter?’ Ignoring the small issues that arise that aren’t high on your list of changeable behaviours so that you can concentrate on 2-3 major ones that needed to change because of heath or safety reasons, like their personal care skills, or violence. I spoke of the importance of letting everything else go because it was necessary for the child to realise that your low demand approach and your language direction was going to be a consistent and reasonable change that would eventually become normality for them and they would begin to trust that actually they could make their own choices and they could be in control of their lives by making the right choices. This would also teach them the crucial part to this new strategy which is the end goal, that your Non - Negotiable behaviour rules could be followed as a result of the low demand environment and language change that had taken place. 

Having a low demand environment for an anxious child will slowly but surely allow them to comply with the things that you simply cannot let go.


Our Non - Negotiable rules and the reasons why we picked them. 

1 - No Violence. EVER. This includes self - injurious behaviours although theres no consequences for this but a lot of Love and understanding instead. 

When Lola was three years old her sister Connie - Mai was born. This was the worst time of our lives and it should have been something we cherished and remembered for all of the right reasons, instead of all the wrong ones. When I look back on those days I feel relief that we’ve made it this far and we have only had ONE majorly serious incident where Connie had to have an operation on her finger nail as it was slammed in the bedroom door. From that day on I knew that things desperately needed to change so that I was able to keep my other children safe and for Lola to be able to find joy in life and not be angry, and distanced and frustrated 100% of the time. This is why no violence is tolerated and will always be my most important non - negotiable.

2 - She MUST brush her teeth at least ONCE a day. 

Lola has had some difficulties with her teeth, some problems from not brushing properly or regularly. Other problems are due to her delay in development and her teeth not forming properly. When my children were younger they were never allowed sweets and chocolates daily. They were also never really allowed juice on a regular basis. I told people that until they were old enough and responsible enough to CHOOSE to brush their teeth regularly and properly, then and only then could they choose what they ate or drank. Of course as Stanley got older and more independent we became more relaxed about his boundaries on Chocolates and juices and so naturally without even realising it, they were all eating what they wanted. This needed to change because the demand of brushing teeth, the sensory issues that go along with it like the foaming of the paste, the taste and smell made things pretty difficult and we needed to introduce this as a Non - negotiable. The consequences for this are choice based. She can choose to brush her teeth and have no dietary restriction or we simply do not buy it or she isn’t allowed it. 

Sure she sometimes resists, and sometimes it causes a meltdown, however once we’ve passed the worst of the introduction then it gets better. She is in control because as she has chosen to brush her teeth she can also choose what she wants to eat. And THAT is the beauty, because although it sounds like a reward based approach, we actually reverse the reward. So when the first two steps are taken and achieved you can eventually tweak this into a way thats more manageable, so instead of giving the cake or sweet as a reward, you allow the cake or sweet, but only on the condition that teeth are brushed after. If teeth aren’t brushed after then Lola knows that the next time she asks she will have to brush her teeth before or she wont get it.

This whole approach HAS to be determined by your child and how they can cope going forward with all the changes. It has been a long road here for us, like I said previously there is no magic wand. Things DID get worse before they got better but they DID get better and that is why I want to share our story. On a whole at the moment, and the boat hasn’t been rocked yet, she is in a GOOD place. I am so proud of her and how she now manages a non-negotiable. 


Next week I am going to write about when and how you can start to increase the demands and change non-negotiable rules and sum up the whole series of blogs and elaborate on our change in language and the types of behaviours we ignore or the instructions we leave out as they aren’t necessary in order to create a low demand, low anxiety household for Lola to be the awesome little girl she is growing in to. 

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20 September 2018

Pathological Demand Avoidance - Reducing Your Child’s Anxiety - PART 2


Does It Really Matter?





I am a little overwhelmed that there were so many people reading the introduction to - Reducing Your Child’s Anxiety - and also so sad that so many of our children are struggling so terribly. I sincerely hope that the strategy I am about to share with you gives you an extra option in your tool box and a little hope that something, anything, just may work to help reduce your childs evident stress and mental exhaustion so that they can gain some relief from their anxiety. 

Sometimes when you try a new way of parenting or some different strategies your child’s anxiety may increase a little before you see any improvements, and I want to reassure that this is completely normal. Its a different way of parenting and things are changing and it can be a little confusing for the child to comprehend straight away that actually they can control this and they can trust you. Its not about allowing your child to get away with everything - although sometimes when you’re tired I totally understand that it can feel like that at times or that people are judging you for your parenting decisions. 

This is YOUR child. YOU make the decisions in the way that you help manage your child’s difficulties and if it works then don’t allow anything or anyone to challenge what works for your family.


There are three steps to the parenting style that we use and they need to be used in the correct order, consistently from day 1.

STEP ONE - Choosing Your Three Non - Negotiable Rules.


The most important thing Is to sit down with the people around you, who live with you, or have parental responsibility and work out the Three (maximum) issues or behaviours that you would like to turn around, or change or eliminate. You cannot have more than three because if you do you’ll be back at square one and things get complicated and theres too much to tackle at once. Creating three non-negotiable behaviours, or challenges that are essential and have some sort of consequence - and this could be a natural consequence (which i’ll explain a bit more about later


The consequence should be treated with caution though. You shouldn’t consequence a child with things that are involved with a sensory diet, or is a repetitive or calming activity that your child uses as part of their routine, and this is where consequences can become a bit complicated. 

You don’t want to introduce these non - negotiable behaviour “rules” (pssss don’t call them that to the child it will only increase their anxiety) - and then take away their I-Pad which helps them sit still for more than two minutes, or keeps them calm in stressful situations and then end up not only stressing your son or daughter out, but punishing yourself and your family at the same time. 

Take away their pudding, or their after School treat. (as long as that isn’t routine based also) You see, this can be quite confusing and the structure of this can be changed and alternated as you wish and as you grow together. You all want to be comfortable in the knowledge that your child isn’t distressed, and the family aren’t all walking on egg shells.  

For example - When Lola becomes violent, which is our top non - negotiable I make sure that the others are okay before I remove Lola from the room and take her to her bedroom. That is her consequence. However, because Lola doesn’t like to be on her own and will not stay there I have to be with her. I use no spoken language and avoid eye contact. Sometimes I’ll make myself busy with tidying around but other times I will sit there and wait until I know she’s going to be responsive to physical contact. Then I will calm her down before I speak to her about what happened. Sometimes this part of the process can take the longest, because she may not be responsive to verbal communication for a long time afterwards and so in these circumstances I will leaver in her room, put her TV on and allow her some time to process whats happened on her own. Violence is NEVER accepted in our house and I know that I am fortunate enough to be in a position where Lola is not stronger than me, and has very rarely been violent to me directly, so this advice may not be of benefit to some people who have older or much stronger children than myself, but you can adapt these techniques to suit you and your child as long as its benefitting you. 

I will always have a conversation with Lola about what happened and sometimes she doesn’t remember, which is quite common for children with Autistic Spectrum Disorder particularly when they’ve been violent as part of a meltdown. 

So choose wisely, and carefully and be realistic. We want this to succeed, and for it to succeed you need to lower your expectations considerably for this to have the desired effect. Remember what it is you’re aiming for and the key point to remember when implementing these ‘non - negotiables’ is that anything else is considered IGNORED. Ask yourself continually “does it really matter?”

“Does it really matter?” - If she hasn’t brushed her hair.
NOPE

“Does it really matter?” - If she is wearing shorts instead of the pretty dress you picked out for her for a princess birthday party. 
NOPE

“Does it really matter?” - If he wants to lay in the middle of the room on the floor in the way of everyone else lining up cars or books. 
NOPE

“Does it really matter?” - If he wants to wear odd socks. 
NOPE

“Does it really matter?” - If she always has to be the first one out the door. NOPE

“Does it really matter” - If they asked for ham and you made ham, but now they want marmite. 
NOPE

They need to see that not everything is a demand. By using the examples above I hope that you can the positive instead of the negative in them and that is key to changing your mindset and your language. So he wants to wear odd socks, at least he got them on! Yes she did ask for ham, but if it encourages her to eat on time then hell I am going to make another with marmite in it. “DOES IT REALLY MATTER?” is a question I find I ask myself almost automatically now, and that also came with the notion of “If you’re going to end up saying YES, then why bother saying NO in the first place.” Honestly I cannot stress the phrase of “DOES IT REALLY MATTER?” any more importantly than I have.

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Lots Of Love....


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18 September 2018

Pathological Demand Avoidance - Reducing Your Child's Anxiety






Parenting can be hard, it can be challenging and frustrating and confusing, navigating your self in a world which is dominated by social media and as a No 1 go to for parenting tips and advice in the form of forums and Facebook groups and blogs, you’ll often find conflicting advice on how to help your child with certain difficulties and find yourself in a tug of war with other parents judging you for the decisions that you make.

Throughout this blog post I will be focussing on our journey with Lola and how we have made major changes to our parenting to help Lola with her anxiety which has helped us as a family grow together. 

Some people may find they’ve already tried these techniques, or that their child is too old, or too anxious or wont be able to comprehend the changes due to learning difficulties. 

Please keep an open mind, if you are at your wits end and have tried everything then there is no harm in giving these strategies a good go before ruling them out. These strategies can be used and adapted depending on your child's age, or cognitive ability and can swapped weekly or monthly until you settle on a natural understanding routine that you are all comfortable with.

Lola was diagnosed with Autism with a demand avoidant profile in November 2017. She was 8 years old. We knew about Pathological Demand Avoidance from when she was around age 3, but as we didn’t have a diagnosis and her profile was so spiky I think we had a natural reluctance to push through and allow these strategies to become a normal part of our life and thus the improvements were in spurts and never long term. 

I cant give you a magic wand I’m afraid, I so wish I could, because I completely understand the difficulties that you and your family have whilst trying to lead a calm and joyful life together with making sense of this long journey that feels like it is never ending. There is no quick fix, no magic wand and its going to take a lot of consistency, patience, understanding and a firm partnership with those around you who are involved with your children’s upbringing.

Firstly, you need to relax, take some time to compose yourself and really think about how you are going to tackle this. Think about it realistically - How will everyone else cope or be affected? and how will those around you be supported so that they can understand why this approach is necessary? For this to have a better chance at being successful you need everyone to be supportive and backing your decisions 100%. Think about what is really important for your family? What do you want to gain most from changing your parenting technique? 

Your child who is demand avoidant is struggling with anxiety because they feel out of control. They need you and everyone around them to adopt techniques that will enable their anxiety to reduce to a level that they feel comfortable enough to feel in control and mentally able enough to begin to follow normal everyday routines without the extreme avoidance that has an impact not only on the child but on everyone around them. 

Language is the key component to managing a Childs demand avoidance. Language is also the most complex component to engaging with a child. Each child is different, and thus their ability to understand, process and interpret language is going to be different also. The main point to remember when using spoken language to a demand avoidant child is to change your terminology and use of instructions. 

TRY NOT TO INSTRUCT Instructions indicate there is NO CHOICE. 

NO CHOICE leads to a rise in ANXIETY.

ANXIETY causes the child to feel OUT OF CONTROL.

OUT OF CONTROL increases HIGHER LEVELS OF ANXIETY

HIGHER LEVELS OF ANXIETY results in DEMAND AVOIDANCE


When you change your language magical things can happen, maybe not overnight, but in time your child’s anxiety will decrease and you’ll find that they are much more tolerant and much more able to comply when they aren’t bombarded with instructions or demands and they are able to process things more constructively and peacefully. 

Its equally important to note here, that even though a child with demand avoidance is more tolerable, the language should NOT revert back. This will most likely cause a regression and you will have to start all over again. This regression could also mean it will take longer for your child to feel in control next time around. 

Sometimes its possible to increase the demands on a case by case basis where you have studied the Childs behaviour and tolerance levels and know that they can mange a slight increase. Use your experience of the Childs behaviour to determine when you can increase non - instructed demands and when you shouldn’t.

The more you understand your Childs non - verbal behaviour, mannerisms, and their thought process the easier this whole strategy will become.

Please keep an eye out for the second part of this blog post series where I will guide you step by step to help reduce those demands and make some simple changes your language.

Please remember THIS IS NOT YOUR FAULT.

Please let me know if you’re going to give this a go? Does it all make sense? I am always happy to answer any questions you may have over on my Facebook Page or Insta so feel free to get in touch.




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